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Thursday, April 29, 2010

Should the mother of a special needs child have a career?

We've all heard the term work-life balance.

SAHM, WAHM, or WOHM we all play a balancing act between being a Mom and having something in our life that is our own.In my case I'm balancing having a family, having a career, and trying to find the time to do the writing I love and the karate that is good for me. Of course being a mom and wife is the biggest chunk of this, but there are times when a deadline at work threatens to tip the scale. Or when a writing commitment I've made takes over a Sunday afternoon.

I am very lucky though. I have a husband that is more than just supportive of my career and my hobbies. He actively encourages me to succeed in both. I also work for a company, and have a boss, that is very understanding of my needs as a mother, and the extra stress of having a special needs child. Honestly, sometimes I get a little teary eyed when I think about just how lucky I am in this regard.And I need to remind myself of this, because sometimes its the outside pressures that make me forget how lucky I am.

Recently I've felt an incredible (sometimes implied, sometimes direct) pressure from the mental health/special needs community that as the mom of a special needs child I should not be working. The system isn't set up to work outside of the traditional 9 to 5 hours and I am expected to fit our schedule and needs into those hours.

Finding a therapist to see us in the evening is nearly impossible. And while Rich also has some flexibility with his schedule and we share the responsibility of covering sick days, and teacher in-service days, I'm enough of a micro-manager that I just can't NOT be at every doctor and therapist appointment.

But again, I'm lucky because my work is so flexible.

What has really made me feel this pressure lately though is trying to arrange summer camp for Noah this year. We would like him to go to the same camp he attended last summer since it is close and he enjoyed it. The problem is that they require him to have a TSS with him at all times since it is a camp for "typical" kids and the counselors aren't trained to deal with his extreme behaviors. The problem with this is that the insurance company is unlikely to approve the amount of TSS hours we need so he can go every day and keep a schedule somewhat consistent with the days he has during the school year. Which is also necessary for me to go to keep a similar work schedule

Our second choice is a special needs/social skills camp that theoretically should be better equipped to handle his needs, but because of his impulsiveness they aren't sure they will accept him. They have suggested we send him to their half day (9-noon) program.

Which would be great, except that I have a job! And even if he attends their full day program it is going to be approximately 3 hours of driving a day for me to get him to and from camp every day and then me to and from work.

And that means I change my 6-hour four-day a week schedule to a five-hour five-day a week schedule. And that means I have to send Kiel to day care every day, instead of four days a week. And frankly, I am not OK with that.

But that may be a mute point because they probably aren't going to accept him into their program anyway, which is another blog post completely, because you better believe that pisses me off.

So that brings us back to the "typical" camp and the need for TSS coverage. There is a possibility that the insurance company will deny our request for a TSS and tell us that if he needs full-time support, a typical camp is not the right environment for him. And if they say that, they are under no obbligation (as it has been explained to me anyway) to provide us with an alternative placement.

The insurance company could also come back to us and deny full-time support but give us fewer hours. Which puts us in a similar position as the special needs camp, because again, if he can only attend part-time what the hell am I supposed to do with my JOB?

I do honestly love my job, and I've said it before on here, I just don't think I would be a good stay at home mom. I am seriously lacking in patience and home making skills for a start. I am however very good at my job. And having a job helps me be a better parent. Not to mention me having a job is what allows us to pay for the psychiatrist that doesn't accept insurance, the therapists that don't accept insurance, and the extracurricular's like soccer and karate.

Oh yeah, and summer camp. Which is damn expensive.

So right now, despite feeling like in general I have accomplished a pretty good work-life balance, when it comes to getting my son what he needs I'm pretty much damned if I do, and damned if I don't.

This post was inspired by the book JUST LET ME LIE DOWN by Kristin van Ogtrop and is part of the Silicon Valley Moms Group book club.

Your post sooooo hit home. Our sons were adopted from Russia, and with some of same issues as "TB."

I'm self-employed and have a flexible schedule when needed, but it can burn through billing time to be chasing specialists who can only be available 9-4. And summer camp? Ugh- don't even get me started!

"Who are you?" Noah asked me once. I didn't have an answer for him. Join me as I attempt to figure this out.So, who am I?

Like I said, I'm working on that, but here's what I do know.

After seven years of infertility my family is finally complete. So join me as I figure out how to have it all, while figuring out what "all" is.

Cast of characters:

Rich - aka Amazing Daddy (AD) - husband and father extraordinaire. My partner in this crazy parenting adventure. Not to mention my soul mate and best friend for the last twelve years.

Noah - aka The Boy (TB) - despite a six month detour in a Russian orphanage, still my "first born." Challenged with ADHD, attachment issues, sensory processing disorder, PDD-NOS, and most recently bipolar disorder, he still charms and amuses us daily.

Kiel - aka Baby Brother (BB) - our science baby. Not linked to us by genes, yet still carried within me for 41 amazing miraculous weeks. The culmination of seven years of fertility treatments, including several IUI's and three IVF cycles.